As PMDD Continues To Go Undiagnosed In India, A New Initiative Is Fighting To Stop The Stigma

A young woman in agony—sprawled on the floor - wondering when and if she’ll get the help that she needs. This is the story of millions in India suffering from PMDD, a cyclical, hormone-based mood disorder.


India | In photographs, this is the story of Anuhya Korrapati, a 25-year-old woman from Bangalore, India. The images visualise her experiences living with Premenstrual Dysphoric Disorder (PMDD): a condition with symptoms arising during the premenstrual cycle.


It's a tale that perhaps 22 million menstruators in India, estimated to be living with undiagnosed PMDD, know all too well.


It's not un-common for sufferers to feel like they're on the brink.


“I can’t take this anymore.” “I want to die.” “I’m in so much pain.” These are the words that some usher in their heads every month before their period begins.


And living in a country where the word "period" is whispered in hushed voices, and packets of sanitary pads come double wrapped in black plastic, where even advertisements show the colour of period blood as pale blue— awareness about menstrual health has remained largely restricted.


In the midst of misdiagnosis, no diagnosis and a lack of treatment - stories of menstrual disorders and varied menstrual experiences have often been deliberately cast to the side - leaving those in dire need of attention isolated.



Changing this narrative - or trying to - is a new and ambitious media project called The Biological Reality.


The initiative is an auto-photography storytelling project that seeks to represent and empower the biological realities of people with a range of menstrual health experiences such as: menstruating with disabilities, Endometriosis, Adenomyosis, Uterine Fibroids, PMDD, PCOS, Queer and Trans Menstruation, Menopause etc.


It also seeks to destigmatize menstruation and related health issues whilst exploring intersections of menstrual and mental health.


The idea for The Biological Reality was thought of during a cathartic telephonic conversation between Korrapati—a researcher currently pursuing her PhD in Health Economics and Geetanjali Gurlhosur, a media professional, as they discussed their own experiences with PMDD.


They both wanted to bring inclusivity and agency in the menstrual health discourses and fight the medical gaslighting that several menstruators in the country go through.


There needs to be robust action in-terms of how we diagnose these conditions.


"In India, the first line of treatment commonly prescribed for any form of the menstrual disorder is birth control pills. Just imagine if you go with a huge laceration on your head and instead of stitching it, the doctors put a band-aid,” said Korrapati who is part of the advisory panel of IAPMD (International Association for Premenstrual Disorders).


She feels that most health care professionals in the country believe once you have children the pain will suddenly go away.


Speaking first-hand from her own experience Korrapati knows this issue all too well.


After being put on birth control pills and chemical menopause in India for her then undiagnosed PMDD, Korrapati, only received a formal and a proper diagnosis in the UK, where she pursued her post-graduation.


But millions of women and transmen don't have the privilege of seeking treatment abroad and often have to live with the dismissal of their pain or experimental treatments.


A report by the Economic Times quoting the 2017 Health Survey by MAYA—a Women's fertility and health tracker, states that "of the 18 countries studied, India ranks alarmingly low regarding healthy menstrual cycles and stands at the bottom of the pile."


Another problem, says Korrapti is the bias that some medical workers may have against the trans community who complain about pain.


"I think the sensitisation should come not just in terms of dismissing or trivialising patient’s concerns, but also in terms of respecting and not being judgmental. For example, when trans men, who are yet to undergo surgery visit a healthcare professional complaining of period pain, they are usually told they might be having gender dysphoria.


"People are stuck in this conversation and cannot look past gender identities. This may discourage trans people from going to the doctor—inhibiting or stopping health-seeking behaviour," says Korrapati.


Lucky Neog, a 25-year-old trans man from Assam in India, and one of the participants in The Biological Reality, agrees.


"Transman visibility is less. People are only concerned about how you came out, if you received acceptance from parents and society and how you see yourself. While this is important, it's time we dig deeper," he says.


To encourage people to dig deeper and explore his own menstrual experiences, Lucky chose to photograph himself for The Biological Reality.


Hailing from a conservative family wherein "women" needed to eat and sleep in different rooms while menstruating, Lucky went through loneliness and gender dysphoria. "Even buying pads was scary. I would pretend to talk to someone on the phone, asking which pad they wanted to buy," Lucky adds.

Over the years, Lucky describes his experience with menstruation as one with "ups and downs—but mostly downs." He often told himself that he would learn to live with it.


Now as Lucky transitions, his periods have almost stopped but he still experiences painful cramps for long hours. "Usually, they last for 7-8 hours. I can't breathe properly, can't talk, can't sleep," he says. Lucky photographed himself for The Biological Reality on the day he was undergoing cramps.


His photo series comprises four powerful and moving photographs that play with shadows and mirrors in dim lighting.


They show a changing body in pain sprawled on the bed with arms tightened around the abdomen; one sitting on a toilet seat with head buried in palms and a mirror reflecting his pain and distress.


None of the photographs reveal a face—perhaps, in an attempt to portray a biological reality that is indeed his, but isn't his alone.


"This was one of the first times I experimented with auto-photography. It made me feel really good and made me reflect on my experience with menstruation. I realised how photographs not just grab attention, but speak directly to our own emotions. Importantly, they show others how we frame the world around us," states Lucky.


This is precisely what The Biological Reality envisioned when they decided to use auto-photography as a medium of expression.


"Nobody sees you walking around with the illness, and no one notices it. So we thought that one way to make invisible illness visible is through photos. It's a way to control one's narrative—to remove that gaze of someone else and stay true to our experiences and images," asserts Korrapati.

Solving the issue:


But the genesis of The Biological Reality [TBR], a new project with a mission to drive out stigma, lies in an online support group that Korrapati, a researcher currently pursuing her PhD in Health Economics, founded after her own diagnosis.


The social-media platform dubbed 'BeyondBlood' aspired to start a conversation around Menstrual-Mental Health focusing on PMDD.


"Initially, PMDD was a traumatic and a lonely experience because there was no one else for me to say—’you know what, I feel the same way’. So, I started BeyondBlood on Instagram, which allowed me to connect with other people with PMDD. It felt incredible as everyone had the validation that they needed," said Korrapati.


As the group gained attention, Beyond-Blood also started to build parallel support systems from people with other menstrual disorders and experiences.


“One of the ways we shared our thoughts was that we all photographed ourselves. If it were one of the days we were feeling better, we would put on some lipstick, wear something pretty and then take a picture of ourselves.


"I realised that taking pictures of ourselves can be a very cathartic process. It's like a journal for us, and that is why we thought of creating an extended platform, a media project, 'The Biological Reality'," said Korrapati.


Black And White


TBR’s pilot project has five poignant and powerful photo narratives of 5 different realities.


"Even with the same diagnosis, people have very different symptoms and experiences and it's also almost impossible to tell some of the menstrual/premenstrual disorders apart because there is almost no research in the area yet.


"So, visually, the black or white colour theme was set to show our similarity as well as extend solidarity in going through its pain, unnecessary shame and helplessness and photographing it,’ says project co-lead Geetanjali Gurlhosur.


These pictures include Lucky's reflections on trans-menstruation and 24-year-old Purnima’s* story exploring her relationship with her stoma— a bag that she must now use since she lost a big part of her large intestine and kidney after 11 failed ablation surgeries for endometriosis.


Also featured is Ramona’s* photo narrative about being dismissed for years and diagnosed too late with uterine fibroids.


In one of the photographs, it shows the 40-something-year-old woman leaning back in agony as she experiences hot flashes while in another photograph, she clutches onto her cup of coffee as firmly as she holds on to her pathological reports.


TBR, as a patient-led movement, wants to focus on the agency of patients and address the gap that exists in medical research and education. For instance, a Harvard Health Publishing report states that '70% of chronic pain impacts are women. And yet, 80% of pain studies are conducted on male mice or human men.'


One of TBR’s photo-narratives beautifully addresses chronic pain and its relationship with one's body. It's a picture of Naina Sareen, a 30-year-old actress, with PCOS, who has lived with "extremely painful" periods since puberty hit.


"It was an abnormal amount of pain, and I would choose to die over this pain," Sareen says. She was diagnosed at the age of 22 with a growing cyst in her ovaries and put on chemical menopause at 23, for about a year.


"I didn't get periods for a year and a half, and my cyst disappeared. But then, when my periods resumed, I started losing a bunch of hair because of the hormonal imbalance. I had a bald patch and was scared to even put my hair in the water. I was briefly depressed and found out that the vaccine I was given for menopause has since been banned,’ says Sareen who has stopped visiting doctors and relies on painkillers.


Sareen continues to live with chronic pain. However, what has changed is her frayed relationship with her body.


She started clicking self-portraits in the first lockdown in 2020 when commercial set-ups in the film industry halted.


"I had been thinking about how shame is deeply entrenched into being a woman in my culture. The self-portraits helped me explore my womanhood and femininity and made me inquisitive about my relationship with my body.


"I realised I had always looked at myself from the gaze shaped by the men and women in my family. In the lockdown, I had only four walls to experiment with. So I had to draw inspiration from myself, my body, my hair and stuff around me. Seeing everything in a different light, I developed a lot of empathy for myself,’ narrates Naina.


Having witnessed the power of auto-photography herself, Naina needed no convincing to participate in TBR. Her images are raw and honest and play a lot with natural light and lines on her body—something that Sareen loves to experiment with.


‘Through TBR, I hope that I will inspire at least one person to love themselves as well as understand better how other people also deal with chronic pain. I also want to use the platform to talk about menstruation because people should be allowed to talk about it freely,’ says Sareen.


These photo narratives will be posted on TBR's website and Instagram account. They will also be translated into a digital photo book. The team also wishes to collaborate with universities and art galleries to conduct physical photo exhibitions around the country.

 
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